Confused - Ibs, celiac disease Or Just Slightly Intolerant?

[Blondie13]

Hi there

I have just discovered this site after it was reccommended by someone in an email, following a post on an IBS board here in the UK. I'll try and condense my situation into a few bullets, to make it quicker and easier to read:

- Through my life I have always had a 'sensitive stomach' - whenever I was ill, 99% of the time it was stomach related

- November 2004 - Hospitalised with severe gastroenteritis. On a drip and on morphine for couple of days. Hell on earth!

- Following November experience had diarrhoea every day, always getting bloated, etc too.

- April 2005 - Hospitalised again, again with severe gastroenteritis. Prescribed course of strong anti-biotics, again put on morphine and drip for couple of days.

- Following second gastroenteritis symptoms got worse - still had diarrhoea all the time, got so bloated after eating I looked 6 months pregnant, stomach started getting really painful. Developed anxiety about bowel movements because of severe symptoms, and, after hiding it from family/boyfriend for few months realised something was wrong:

- Late June 2005 - went to doctors. Seemed a bit disinterested, said it would 'probably go away on its own eventually'. Prescribed amitripylene, at night. Told to take Immodium 'when I got upset'

- August 2005 - symptoms were so bad went back to GP, with my mum for added support (even though I was 23!), demanded to be referred to consultant. Luckily have private health insurance, so got an appointment fairly quick:

- August 2005 - saw consultant. Had an endoscopy and a colonoscopy, and then the thing where you swallow a camera in a little pill. Was told had 'slightly' abnormal villi that meant I 'either had an immediate relative with celiac disease, or I would develop celiac disease in the future at some point'. Nothing else really wrong, except the pill camera showed my upper GI processed food very, very slowly, and my lower GI processed them very, very fast. Given no idea what this meant! Diganosed as 'Post Infection Disorder IBS'. Told to eat more fibre...

- Symptoms got worse progressively. Lost my job from taking so much time off work and have not worked since. Now rarely leave house as got so bad - I am in severe pain every day (that leaves me sweating and crying), would have diarrhoea several times a day if I didn't take Immodium every day to slow it down a bit. Couple of months ago I started following Heather Van Vorous's 'Eating for IBS Diet', which has helped a bit (bloating has gone down, and gurgling, etc, but still in so much pain). Saw doctor again last week, who increased my Amitripylene up to 50mg a night, gave me Immodium on prescription at 4 a day, and prescribed Codeine for when the pain is at its worst. Also gave me an anti-spasmodic to take before I eat (Mebeverine)

- Got my GP to refer me to a respected hypnotherapist (Peter Whorwell at Manchester University) for gut-directed / IBS hypnotherapy. Great success rate but appointment not til May 10th

- Ordered myself the YorkTest food intolerance testing kit (again lucky enough to get it covered by insurance). My results:

- Foods to AVOID and the strength of the reaction (from +1 to +4)

Cows Milk +2

Wheat +1

Gluten (Gliadin) +1

Buckwheat +1

Corn (maize) +1

Millet +1

Lamb +1

Yeast +1

- Foods to ROTATE/eat with caution

Barley

Egg White

Pork

Beef

Lentils

Hazelnut

Garlic

Ginger

SO, that's my situation as of today. I have only left the house 3 times in 4 months, and for a once highly confident and sociable person, working in Marketing and travelling the world, that is SO depressing. I really need some advice from people going through something similar. Does my intolerance to Wheat/Gluten mean I am further along the path to 'developing celiac disease'? What the hell can I eat - between wheat, gluten, corn and yeast that rules out about 80 %of my diet?! I already had eliminated all dairy other than the occasional bit of cheese, which I have now replaced today with dairy-free cheese. I know it's pathetic but I'm really scared, and don't really understand my position. Do I have IBS or celiac disease? Or both? Is it possible to develop celiac disease slowly, after a period of time? Or after gastroenteritis?

Are there any supplements I should be taking? I heard acidophollus is good? I know it's a lot of information, and lots of questions, but I'm so confused!! Any information on ANYTHING at all will be so gratefully received? I have second cousin with celiac disease, but no-one closer that I know of. Should I ask for a blood test to look at celiac disease?

Help!

Right, I'll stop now...

[Nancym]

I'm also intolerant of a lot of foods. Surprisingly humans haven't been eating grains for all that long. Only a few thousand years in some areas. So, what did humans eat before grains and convience foods came along? Fruits, vegetables, meat, maybe eggs and nuts. You might want to look into trying a diet meant to help heal a messed up GI tract, like the Specific Carbohydrate Diet or a diet based on how people were probably evolved to eat, the Paleo Diet. You might find that milk products give you problems too, they do me. It isn't the sugars it is the protein in milk that makes me sick.

I'd recommend a very basic diet with no grains or milk products and keeping a food journal for awhile and gradually try new foods and see what you react to.

IBS is a grab-bag diagnosis. When they don't know what is wrong they slap the IBS diagnosis on you and hope you'll go away happy with that. Personally I think that IBS is probably a lot of food intolerances and perhaps other GI diseases that simply haven't been diagnosed.

Celiac is just the end-phase of gluten sensitivity. Not all GS people end up with villious atrophy (Celiac) but they are still sick and suffering.

Are you on a gluten free diet now?

[DonnaD]

Hi Blondie

I'm in the UK too, also got and IBS label at 16 or so, although I had C rather than D. I also struggled with an ever increasing list of foods to avoid after getting the york tests done. Only last year when my daughter was biopsy dx coeliac did I reaslise that Gluten was my problem too! Now gluten-free and have normal BM, less pain (I have fibromyalgia too) and currently looking into thyroid and adrenal exhaustion. Gluten seriously messes you up if it isn't picked up! 'Early Celiac' was my daughter's dx but her consultant told her to go straight on the coeliac diet, confirmed the diagnosis and we havn't looked back since. Your consultant sounds useless, sack him! I never got anywhere either until I had health insurance from my, now lost, job.

Have you ever had any blood testing for coeliac? if not request from your GP who will try and fob you off with just the EMA, ask for the whole lot (someone plse post the list). If you PM me I can give you the name of a wonderful Gastroenterologist your insurance will cover in London. My friend who i 'diagnosed' at christmas dinner is seeing him and he does not give up until he has confirmed/ruled out the coeliac Gluten sensitivity and sorted out the associated problems, she also suffered for years with so called IBS, and candida.

If you do want further testing DO NOT GO GLUTEN FREE UNTIL AFTER THE TESTS as the results are often falsse negative (as my daughter's were) due to low/no gluten intake. (this is why I did Enterolab sool testing which GPs don't really accept but I needed my 'bit of paper'.

Tthe actual diet is actually quite easy once you get your head around what you can eat rather than what you cant! There are some excellent cook books available from Amazon.co.uk Once you get a correct diagnosis then bread, biscuits, pasta flour mixes etc are free on prescription, you just pay for an annual season ticket £90 or so. Waitrose and Marks and Spencer have extensive lists of gluten free foods, waitrose own brand goods are gluten-free if possible. The gluten-free manufacturers will send you big sample boxes of bread, cakes, pasta. Eating out isn't too hard either.

Open Original Shared Link and Open Original Shared Link are excellent and well written article. Also print out full sympotom list, you will be amazed to find things you had never thought of, mouth ulcers, crakacked lips etc, etc, Open Original Shared Link

Open Original Shared Link huge amount of info and links.

I spent a solid week on this forum initiallly and learnt a huge amount and got an amazing amount of support., thanks Girls (and Boys!) 'Classic Coeliac' and Gluten sensitivity are all part of the same Coeliac 'Iceberg' and cause all the same problems, I would put money on you having Coeliac! My new doctor said that IBS is just a meaninless label for a collection of symptoms with no apparant cause! the 'Gastritis' is just a symptom of the underlying problem my daughter had several attacks after some long courses of antibiotics for UTIs (I suspect the antibiotics knocked out the good bacteria and finally tipped her into full blowen coeliac) she was originally being investigated for H pyrloi and stomach ulcers, they found her reflux and took biopsies to rule out coeliac during the scope, and were surprised that the villi were damaged, and issued the DX.

You do not need a hypnotist or amitripylene (which really screws you up, I gained 20lbs on it and nearly drove my car off the road several times) You will get your life back!

Good luck

Donna

[nettiebeads]

- August 2005 - saw consultant. Had an endoscopy and a colonoscopy, and then the thing where you swallow a camera in a little pill. Was told had 'slightly' abnormal villi that meant I 'either had an immediate relative with celiac disease, or I would develop celiac disease in the future at some point'. Nothing else really wrong, except the pill camera showed my upper GI processed food very, very slowly, and my lower GI processed them very, very fast. Given no idea what this meant! Diganosed as 'Post Infection Disorder IBS'. Told to eat more fibre...

-

Slightly abnormal villi... Didn't they want to know WHY???? Sheesh. Sounds like celiac to me. I suppose there are other diseases that could cause that besides celiac, but I'm putting that at the top of my list of suspect reasons. After all is said and done, try the gluten-free diet for 2 to three weeks and see how you feel. And stay away from barley and malt items too.

Annette

[CMCM]

In all the reading I've done,I don't think I've ever read that "slightly damaged villi" mean you might have a problem in the future....rather, it means you have a problem NOW. Something is damaging your villi. Sensitivities other than gluten can also do that....dairy, for example, if you are casein sensitive. But from your descriptions, it sure sounds like celiac.

I'd really recommend a very very simple diet for awhile. Concentrate on lean meat protein, eggs, vegetables, limited fruit. Don't eat any grains of any type for awhile, and that includes rice. Avoid starchy things (like corn). If you can, it's also good to eliminate or greatly minimize sugar (which will be easy to do if you're not eating any grains). I am casein sensitive, yet I seem to handle limited amounts of hard cheese such as cheddar with no problem. This is the diet I'm following right now, and this is what finally settled my digestive system down completely. (This is basically the Atkins diet).

If you do this for just a couple of weeks you should really see a difference in how you feel. I myself felt better in just a couple of days.

Learn all you can on your own....I'd recommend "Dangerous Grains" to start...available on Amazon.

[Ursa Major]

Hi Blondie, and welcome to this forum. I agree with the others, it sure looks like classic celiac disease to me. If your villi are damaged, they are on their way to being non-existent, don't let it come to that! Your testing shows that you can't tolerate wheat or gluten (which is not just in wheat, but rye and barley as well). Seeing the combination of wheat and gluten intolerance and villi damage, personally I have little doubt that you have celiac disease.

I agree with Donna, fire your doctor! Find somebody who knows what he is talking about. You have suffered long enough, put a stop to it. Either by finding a doctor who will confirm celiac disease, or by putting yourself on a gluten free diet. But you can't go on living like that!

I hope you get it figured out really soon.